This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you ever felt overwhelmed because you can't find the information you need or you're drowning in so many conflicting resources, you don't know what to do with it all? Today, we're discussing a step-by-step roadmap pointing you to the final set of steps and resources to prioritize when you've now become fully responsible for the care and safety of your care receiver. If you haven't listened to the previous episodes that cover the first 17 steps, it may be helpful to listen to them first. There are episodes 43, 44, and 45. In this final episode, we're talking about steps 18 through 20, and we call these steps later on. Music Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice, and because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music In these episodes, we've been stepping through the roadmap of resources for the stages of the dementia caregiving journey. Before we get too far down a path, let's go back and discuss the dementia caregiving journey and hear more about this last stage. Sue? When Nancy and I started talking about our caregiving journeys, we figured out that they came in three distinct stages. We're not talking about steps or stages or phases of the dementia journey. We're talking about our caregiving stages. We identified stage one is in the beginning when our care receiver is pretty much fully independent, and they can be making a lot of their own decisions. And we're kind of helping, but helping behind the scenes. Stage two, we call the messy middle. Because it is. It is. Yes. They're beginning to have less control over what they're doing. And so we've started to assert control in certain areas. And frankly, many people don't like it. They're not very happy. They're struggling more. We're trying to help them do as much as they can on their own. And it's, it just, it just is messy. And so we want to be able to, again, keep helping them have as much dignity and independence as possible, while still asserting control to help keep them safe. And then stage three, which is what we're going to be talking about today is what we call later on. It's where we are now fully responsible for their care and safety, whether that's guiding others or doing it ourselves. Caregiving actually in some areas becomes easier because we're now in control. We're not struggling with them. We've just taken it over. On the other hand, it's harder in some areas. So we're going to talk a little bit about what that looks like. Another area is that we become more aware of our grief. We talked in the first two stages about drip grief, a little bit of grief along the way in this area, in this area, in this area. And now that our journey has come to the point where we're fully responsible for their care and safety, we've now started having potentially some what we call anticipatory grief. It's where we're anticipating the end, our loved one's death or any other kind of a significant loss. And that's a different kind of a shift in grief. And just as important with the others is that we make sure that we get support, that we don't process this alone, that we don't struggle alone, that we get some support. And this is why we want to make sure that we keep focusing on prioritizing our self care and reaching out for support. And the reminder is the fact there are two of us on that journey. It's our care receiver. It's also us. And for both those people, as we get into these last three steps of the roadmap, we want to make sure we're covering everything that you need to be thinking about here. So let's walk into step 18. This is kind of uncomfortable. Step 18 is to plan for the end of life service. You may be thinking, well, not now. No, it's not, it's not happening anytime soon. The fact is you don't know. And so if you, you hopefully were able to get a lot of planning done early in the beginning with your loved one's input. If you weren't, you're going to make some of these decisions without them. Even if you were, we recommend you get down and do some planning now. And why is that? Because when the end does come, you're not going to feel like doing this. You're not going to want to deal with all these arrangements and thinking this stuff all the way through. So do it now. Hopefully it is towards the end and in that awesome so you can get this planning done and out of the way. We cover this exact topic in episode 30, end of life, end of life service planning. And we talk about the fact this is best done before you're in a terrible situation and upset and truly in massive grief. So let's get it done sooner rather than later. There's also a worksheet that goes with this. We recommended it in the beginning as well. It goes through all the different things that you can think through and a place to put the name of the funeral home, the contact information, who the, if you're having a service with a pastor, who's the pastor, where's the, where's the service going to be, what the contact information is. It's got a place to put all that information in it. It's also a place to leverage at the beginning of your journey where you're trying to decide is it going to be a burial or a cremation, etc. So leverage the worksheet as well. And that part of that process. If you've done it, especially in the beginning and you haven't revisited it, there are things that could have changed or you want to make sure your family members haven't had any different ideas or anything that's happened. So even if you've already done it, go back and revisit it and take a look at it and get everybody involved with it and have them thinking through it. So just as well for them, they don't have things to be going through when our loved one passes away. We've talked in earlier steps about palliative care. And now is the time for us to be bringing in hospice care. And if we didn't use palliative care, we're going to go find a hospice care organization. Almost always if we were using palliative care, we have the option of the hospice care that they're associated with. We may have found a different hospice organization we would prefer. However, it's now is a really good time to be bringing in hospice care. And the podcast episode 29 is when to call in hospice. It helps us to identify now that we have there's the physical and the emotional recognition that we are no longer going to be trying to extend the life we're going to be providing comfort care. It's very helpful to now have hospice guide us on what that looks like. And whether you've participated with the guide program and they can give you support of the palliative care, they're going to help you find the organization to work with. You get a doctor's referral and you schedule an initial evaluation and it's really with my husband, we got an evaluation before he qualified for hospice care so that for him specifically, they had these are some of the signs that we would be looking for that he might be ready for it. So it's good to get the evaluation sooner than later and especially if you've got palliative care in. So if you have palliative care, they'll tell you when it's time to call in hospice. If you have the guide program in the US, they'll tell you when it's time to call in hospice. If not, soon our big believers and you'll hear this in the podcast episode, it's almost never too early to call in hospice. So don't think you have to be the one to judge because they'll tell you if it's time to call in. And they would love to get a baseline with your loved one even way before it's time for them to come in because then they have something to judge against when you think things are deteriorating. And one of the interesting things you'll learn and I learned this from our experience is that they we evaluated my husband for hospice and in the beginning he didn't qualify. Then when he did qualify and he was put under hospice care, he started to rally and he graduated from hospice care. He graduated from hospice care for over a year. And so again, to your point about it's never too early. You know, we think that hospice care means end of life. It just doesn't. In your search engine, look at hospice and then either your state or your country or the city that you're in and scroll down until you get by the sponsored links and find places. And then look at more places. So find different hospice care organizations. Look at the ratings of them, call them. They're very glad to talk to you about their programs and what they have and schedule an initial consultation. Again, they will help you. They'll tell you and they'll give you insights and they give you things to go through to help you then know when it might be actually the right time to call in hospice if it isn't now. Right. So I think what's important about this section, Sue, that I'm thinking as we talk here is we're saying later on is when you've you really have taken complete control of their care. That doesn't mean they're going to pass away in 12 months. But what we want you to do at this point, even if you don't think they're imminently going to pass away is go ahead and plan the funeral services because you're not. There's no pressure. Do it now when there's no pressure. Go ahead and call hospice because hospice will come in, do a baseline and then when you when something changes, they'll come in and do another baseline. And if they're ready, then they'll accept them. If they're not, they'll come in another time. So we're not suggesting, oh, we've given up and now they're getting ready to pass away. We're saying when you move into the later on stage, get ahead of both these things. Your point is very well taken, Nancy, because I know people who have waited till their loved one was just about to die before they called in hospice because they didn't know their understanding of hospice was end of life. And they didn't recognize that there are so many things hospice can do in support of our loved one well before the final days of their life. So really, really good points about that that they're going to let you know. So it's not too early to call them in and ask the questions and have them give you guidance. Okay, so that leads us to our last step, which is step 20. And we want to circle back to the caregiver to you. And that is this concept of grief and grief is not, we're not talking about grief after someone has passed away. We're talking about anticipatory grief, which says, you know, things have dramatically gotten worse. And you know, their passing is imminent. It might be two years from now, but you're beginning to grieve the loss of this person. And you're more than just the drip, drip grief, you're looting, you're grieving a loss in a deeper way. And so we do have an ARP article that's quite good about understanding anticipatory grief that we put a link to in the show notes. And it's also in the guide just so everyone gets a chance to sort of check in on themselves when it comes to grief. One of the things I learned about it in all of my journeys, because it's a different loved one each time. And when it was my grandmother, I mean, she and I had been so close, she was so influential in my life. And I had a certain kind of grief for her. And I was feeling different emotions for her. Well, then there's my dad, my hero, I mean, he'd my hero all my life. And, and I had a different set of emotions in my grief for him. And then there's my husband, we've never practiced, we've never experienced the same emotions and the same kinds of feelings, depending on the person that it is. So it's reasonable that we would benefit from understanding how we're feeling and having resources and having places to talk about it and process it. So when we, when we have we're feeling that one of the most important things we can do is honor it, honor our grief, be compassionate with ourselves as we would with others, reach out for support. Because each of us navigates each loss of a loved one, a different loved one in our own time, and in our own way. And it's reasonable that when our caregiving journey ends, some of us are going to feel angry, or we're going to feel a sense of relief, or we're going to feel a loss of our identity, we've been a caregiver for so long, and we've prioritized our love and we would, you know, who are we now and what do we want. And we feel then we feel guilty if we feel relieved because gosh, you know, you know, I shouldn't feel relieved because my loved ones passed away. So we're not really sure how to feel and what to do and it can get very jumbled and very frustrating. And so this is a really, really important time for us to reach out to others to be with others to be with others. To talk about it, to share it. And this is another place where support groups are so valuable, because those of us who are in support groups have navigated these and we hear where you're coming from and we understand it. The most important thing is to reach out. That's great advice. So. All right, well, let's summarize. This is our final episode in the series focused on the navigating dementia caregiving roadmap. We've now covered all 20 steps. These are the last three steps. So let's discuss what those last three steps were. Step 18 was to plan for your end of the end of life service. Does it mean it's the end of their life, but it is time to plan before the pressure's on. Step 19, bring in hospice. Also, do it way earlier than you think you need to. Nothing wrong. You, you, the worst thing that happens is they come in doing evaluations and say not now. Awesome. And step 20, continue your self care and be particularly sensitive to your anticipatory grief. And then your grief overall leverage support groups for yourself and stay in touch. Honor your grief. That's for sure. If you like this podcast, please subscribe to it or follow it. And every resource we discussed as usual, the links will be in the show notes, as well as in the guide itself, especially in this stage, the later on stage, we know it can be really overwhelming. Please always remember that you're not alone. Reach out. We're all on this journey together. Yes, we are.
